Tamoxifin

[Bentley1]

Have been on tamoxfin for 2 1/2 years.  Experiencing severe joint/ligament pain in legs, shoulder, hip, feet, neck muscles.  Doc says not related to tamoxifin (tamoxifen); I disagree.  Discontinued use to see if pain is indeed related to tamoxifin (tamoxifen).  I will see my docs in 1 month and relay info if pain stops.  Have NEVER had any of this muscular/joint/ligament pain before the inception of tamoxifin (tamoxifen).  I know my body!  What is your opinion?  Thanks.

[CCF-RN,MSN-JS]

Dear bentley1, Generalized joint pain is not usually a side effect of tamoxifen.  Bone pain is documented as an uncommon side effect of the drug, and if this occurs it usually happens early on in treatment.  Discuss your symptoms with your doctor who will take into account the entire picture when evaluating your symptoms.

[susan m k]

Hi.  I must say that I, too, suffered severely after starting Tamoxifin (tamoxifen).  I was on Tamoxifin (tamoxifen) for about 2 months when I realized most of the joints in my body were either swollen or sore or both.  I could only scribble my name on a check because I was incapable of holding the pen.  I was 48 at the time.  Did you have chemotherapy?  I blame this problem on both the chemo and the Tamoxifin (tamoxifen).  I believe the chemo damaged the myelin which wraps the nerve fibers. I am megadosing myself on Hyaluronic acid, glucosamine, MSM, condroitin, l-carnosine and calcium d-glucarate.  I am stretching every morning for about 10 minutes and it's just been in the past 2 months that I am starting to feel relief.  By the way, I have been off the Tamoxifin (tamoxifen) for almost 2 years.  This is just what I do because I have been tested for everything except polio and lime disease and I didn't know what else to do.  I hope this helps, Susan

[Pam`]

I too have had problems with this type of thing- I started taking Tamoxifen in May 2004 as a preventive due to strong family history and having be diagnosed with ADH- since starting tamoxifen my right arm is always sore and i too have trouble writing - also I am awakening EVERY night at 4 am with severe foot and leg cramps - never had this before - I too was told not Tamoxifen related but no answer as to why it is happening all of a sudden- I would be anxious to learn if the person who stopped taking it feels some relief ! thanx for listening

[carme]

I was on the BCPT tamoxifin (tamoxifen) trial for 4 1/2 years. I didn't complete the trial because I could not take the pain and edema caused by the drug towards the end, the first 4 years were uneventful painwise.  On the other hand, I made it to the age of 50, had prophylactic bi-lateral mastectomies, (they found lobular neoplasia stage II)and have been told that the tamoxifin (tamoxifen)
probably kept breast cancer at bay for awhile, since I have a younger sister DX at 47, a maternal cousin at 35, lost an aunt at 42, mother DX at 54, grandmother at 61. Later found out we have a BRCA2 mutation.  So I am glad I participated in the trial, but was glad to get my "quality of life" back.  I would do it again in a heartbeat....we've got to find a cure!

[pricefam]

I've been on tamoxifen for 2-1/2 years following a lumpectomy and radiation for DCIS (no lymph node involvement).  In the past year, I've begun to experience joint pain in ankles, elbows, knees, back, etc.  My surgeon suggested that I stop tamoxifen for one month and see if there is any improvement.  I've been off for nearly 3 weeks now, and there is some improvement, especially in my feet and elbows.  She said that if I did experience some improvement, she would likely switch me to arimidex (sp?)  I'm anxious to see what happens.  It appears to me that there IS a connection between tamoxifen and joint pain.

[zissel]

dear bentley:  I know just how you feel. Unfortunatley the doctors dont listen to what you are saying.  There are people out there like you (and me) that have horrific muscle pain. I just came to the conclusion that it is from the 4 months of taking Tamoxifin (tamoxifen).  I went thru different tests, m.r.i. and no diagnosis was made.  I am off of the Tamoxifin (tamoxifen) now for 2 weeks and I feel 100% better.  I am going to my oncologist on Fri I hope that she will listen to what I have to say.  zissel

[Chatty42]

Hi...I've just started Tamoxifen and I don't know if what I'm feeling will go away, but my lower abdomen feels just like it did many years ago when I was about to start my period.  Does Tamoxifen affect the ovaries since it stops the production of estrogen??  And too, my hips ache all the time.  I have read that it's been reported that bone pain is a side effect of Tamoxifen.  I'm concerned since I have so much cancer on both sides of my family and that uterine cancer is one side effect, possibly slim, but it's there.

[dammie]

Since the site is closed you will not be able to get an official response to your question.  However, from one patient to another, I would suggest calling your doctor to let him/her know what you are experiencing and see what steps are to be taken.  Our body gives out signals for a reason.  If what you are feeling are side effects then at least you will know that there are no additional underlying problems.  I currently am on Arimidex and am also experiencing bone (hip) pain.  I will be seeing my doctor.  Remember, a phone call never hurts and it will put your mind at ease.  Good luck and God Bless.

[chtblnd]

I have been on tamoxifin (tamoxifen) for two years following a lumpectomy and radiation.  No lymph nodes involved.  Diagnosed as DCIS.  I do have arthritis and have ignored the joint pain until recently.  I have developed soreness in both upper arms and have trouble lifting them above my head.  This is a new problem and is painful.  I have also had some foot problems and cramping.  Could it be the tamoxifin (tamoxifen)?  I have three more years of this.

[Brigitte H]

Dear All,

Since 4 years I am taking Tamoxifen. In the first months I also had bone-pains but they went away and never returned. But I still suffer very severly of heating spells, sweating and often I wake up at night and can't go back to sleep which is very hard on me since I am working full-time.

I just had my check-up and everything is fine.

I have a question: Here in Germany women take 5 years Tamoxifen and than they quit. Now I read that in USA women with breastcancer which are postmenopausal (English spelling????)continue to take Femara (Letrozol) after 5 years of Tamoxifen. Could anyone tell me about it. Should I fight to get it too? Here in Germany I have to fight for it because it is still "off label use" over here and the health insurance doesn't pay for off label use.

Take good care of yourselves.

Greetings from Germany

Brigitte

[pinkey]

I have been taking Arimidex since July and have severe joint pain. After 6 months of chemo plus radiation, this seems almost too much to bear. I was told to take tylenol. Do they realize how painful it is? Is it too much to ask to be a survivor and to have some quality of life?

[dammie]

I too, have been on Arimidex for the past several months and have also been experiencing bad joint pain.  Since my bone scan was clear, my oncologist this week suggested that I try glucosamine and chondroitin to see if I get any relief.  I just purchased it at the vitamin store and will try it for 4-5 weeks and let my oncologist know the results.  Ask your doctor if this might be suitable for you and if you have any contraindication for taking it (example, allergies, other meds that you are taking, etc.) From what I understand, I know a few people that have gotten some relief from it.  Maybe it will work for us.  Good luck.